Posted , 4 users are following.
Hi everyone,
Could somebody share his/her experience regarding the recovery after cholesteatoma surgery ? I am personally worried about loosing balance. Would balance be coming back after a while? My ENT surgeon is very skilled so I'm not worry about the facial nerve being a problem but he pointed me out that the hearing and balance could be affected.
Thank you everyone for letting me know.
0 likes, 14 replies
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Michelle_86 kamy52095
Posted
Hello,
Sorry to hear you have colesteatoma, it really sucks. My son was diagnosed with a very extensive colesteatoma at the age of 8 and has to date had 6 operations to clear it.
The balance will be a bit of an issue after operation because it affects your vistibular balance. How bad that is affected will depend on the extent of the colesteatoma and infection I'm afraid. You should be offered after surgery physio to help rehabilitate any balance problems.
As for the hearing again this will depend on the surgery and how bad the colesteatoma is. My son awoke after his first operation profoundly deaf and still is profoundly deaf in the right ear the affected ear. Technology is mu h better these days though even to 8 years ago which is when my son had his very first operation.
You will need some time out of work and to get back on your feet again it will take a good few weeks. Mastoidectomy is a big operation, you will wake up with a lot of dressing packed in the ear which could stay in there for about 2 weeks, this is to avoid any infection getting in the canal. I do wish you iu all the luck.
Michelle
kamy52095 Michelle_86
Posted
Hi Michelle,
Thank you so much for your replay and for sharing your son's post-op balance issues. It is my understanding that my cholesteatoma is a result of the ET dysfunction that consequently lead to a pocketed ear drum allowing for the cholesteatoma to develop, it has not been extended to the mastoid. I also have no foul discharge or smell from the ear. The ENT surgeon who will perform the surgery chose the canal wall up procedure, reconstruction of the ear and timpanoplasty all in one surgery. He mentioned to me the 3 major risks: facial nerve paralyzis (very low);some hearing loss (SOME???-my left ear where the ch.is located is my besst hearing ear, the right one not so good) and balance loss ( he did not mention whether the balance loss will be temporary or permanent). I need to commute back and fourth to/from work on a busy HWY and I'm very scared if I'll have no balance...that would not enable me to drive.
My cholesteatoma was recently diagnosed and it seems not to be very extensive yet.
Thank you so much once again for the replay. All the best to your son.
caz01 kamy52095
Posted
Hi
My son had his 1st major surgery 7 years ago aged 10 years (CWU surgery) and and had slight dizziness when discharged from hospital, the evening of surgery, but apart from that was OK, but I suppose everyone's different. I hope all goes well for you.
Caroline
kamy52095 caz01
Posted
Thank you so much, Caroline for encouragement.
How is his hearing now? Does he have hearing loss in that ear ?
All the best of health to your son.
Kamy
caz01 kamy52095
Posted
He does have hearing loss but doesn't wear any hearing aid, he copes pretty well, just sits with his good ear on best side if eating out etc. He was under GOSH until last year and had various surgeries to improve hearing, prosthesis etc, which improved for a bit but it didn't last. He's really good though, A Levels this year so hasn't held him back. He is actually back to UCLH London tomorrow for MRI results. He was scanned in February and they thought it may have been back but could be scar tissue, so re scanned in August to compare scans. Fingers crossed it's scar tissue. Thanks for your good wishes. I remember feeling so alone and desperate when we first found out. It's been ok though. All the best x
kamy52095 caz01
Posted
What great accomplishments your son have. At least I'm assuming his other ear is healthy which is great. I don't know what GOSH is as I'm very new to this ugly diagnosis. My story started with a harmless hole that was allowing for the mucus to recirculate and drain into my throat which was very annoying. A sinus specialist did a few surgeries trying to close the hole called antrostomy in my maxillary sinus right side. I went through a very rough time from not being able to breath to infections etc. I kept saying that something was happening with my left ear as at some point I could not hear for a few days. The sinus surgeon reffered me to the ear specialist who concluded that I have ET dysfunction which led to the tympanic membrane to be sucked in and yet developing of ch. My understanding is that the cyst is not very big yet and there is not mastoid infection happening. Next week I'll see the ear specialist and I hope to get more details of what I should be expecting. By the way I am located in Canada. Thank you once again for empathizing with me. It means a world to me. Kamy
caz01 kamy52095
Posted
HI Kamy
Sorry GOSH is Great Ormond Street Hospital, hospital in London for children. Hopefully your ch has been caught early by the sound of it before too much damage had been done, you sound like you've had a pretty rough time. Callum thankfully has a healthy ear so is great. He really has been great through all this and probably hasn't suffered like some who have congenital ch have. I really wish you well with your surgery and recovery.
Caroline
Zaq kamy52095
Posted
Hi! There is always a risk with all surgery, and the fact its in your middle ear will always have a potential impact on your hearing and balance. I myself have had my first surgery, and my hearing is currently affected as the bones affected by the cholesteatoma were removed, however I have not noticed any impact on my balance. I am now waiting for the second surgery where the surgeon will attempt to improve my hearing through re-connection of the ocular chain. Before my first surgery, my balance was affected and I had experienced periods of strong vertigo, so overall the surgeries are improving my condition.
Michelle_86 kamy52095
Posted
Hi kammy,
The fact it has not gone to the mastoid cavity is brilliant that will have a big impact on the loss of hearing you may have. Also you have small bones in the ear called ossicles, if they remain not effected that is also good.
Going back to the balance... Because of the type of surgery it is your balance will be a little problematic for a fair few weeks after surgery but as the ear he's from surgery it should improve. My son had to have a total obliteration and a blind sac closure on his last operation because the disease had really damaged the inner ear structures. He lost his complete balance and struggled for a while but with help from the rite team he is doing really well so you just need to work with the rite team to get as much back as you can of your balance.
Sadly a few weeks ago we had an appointment with the ENT doctor and they have found same problem with left ear, he has a perferated ear drum with fluid collecting causing mucas to form and infection has begun. He is on the waiting list for surgery, he has been td he may loose some hearimg, which of course is devestaition because his only hearing side is now bad.
He is 15 in December and as stated above he has had many many operations, has severe balance problems, has severe hearing loss, but he never ever gives up and every new challenge that's sent to him he deals extremely well with it and tried his best to muster through.
He has plays football and has been apart of a team for 9 years now and his hearing won't stop him from doing the things he loves.
I do wish you the best eat of luck and good health. Please do keep us updated of your journey.
Kind regards
Michelle
kamy52095 Michelle_86
Posted
It's so sad and unfair to hear kids going through such hard health conditions. I feel so sorry for your son and on the same time happy that he doesn't let this condition stop him enjoying life.
Has your son been diagnosed with congenital cholesteatoma?
Mine is acquired ; even the ENT surgeon was surprized to see a cholesteatoma developing into a ear where no infection was ever present.
Thank you so much Michelle for your support and wishes. Same best good wishes to you and your son.
Best regards,
Kamy
rob76554 kamy52095
Posted
The only "problem" I have from my surgery is that if its windy, or im in a car with the windows open, sometimes ill get light headed and off balanced for a second. I barely notice it now
kamy52095
Posted
How long ago did you have the surgery? What kind of surgery did you have (CWU & CWD) if you don't mind me asking ?
Michelle_86 kamy52095
Posted
Hi kammy,
He was not born with colesteatoma no. His all started 8 years ago when he was 7 years old, from a perferated ear drum, this happened all of a sudden for no reason at all. He has blood coming from the ear and the GPS told us nothing to worry about and to give him a course of antibiotics to try and help it heal.
The ear continued to puss out, very nasty green colour and smell was horrendous....... A whole year this took to actually get him referred to a specialist and have a micro scope done under a general anasetic. After the investigation surgery the did not find any colesteatoma, but they did say the ear was badly infected and that now they have cleaned it he won't have any problems.
2 days later blood coming from the ear again so we was send to the emergency ent clinic because of how poorly he was and a doctor looked in again and found a very large extensive colesteatoma and he had to HAVE emergency surgery. In theatre the operation took 9 hours, and the colesteatoma was at the base of the brain, it had taken all the small bones and completely wrecked the ear structures inside.
As stated above he has had a operation each year from the age of 7. We have been under The Evelena childrens hospital in London under a professor who operated on my son and then that surgery did not last long so we was then referred to an international specialist who done the blind sac closure and total obliteration.
As I said before my son is 15 now and has not and will not let this horrible persistent problem get him down nor will it stop him from doing what he loves doing.
Best wishes michelle
kamy52095
Posted
Thank you so much to everyone for agreeing to share your story. By all accounts this is a very serious health condition and unfortunately some of us have to deal with it. In a week I'll find more details of my condition and hopefully the surgery date. I'll keep you posted.
Thank you so much once again to all. My best health wishes to you all and your kids who needs to get through this.
Hugs,
Kamy